Keeping (In) Sane Caution: Icky Pictures!

I was supposed to keep track of my mouth lesions since I saw my rheumatologist two months ago. 
It was a real eye opener. Between March/April/May to date, I have had 42 mouth lesions. This is not counting the pustules that did not break open. When I saw her today, she counted 11 blisters on my tongue, under my tongue, on my gums, and on the roof of my mouth (ones that haven't broken open yet). Not every one will break open. Some become like blood blisters. Others will be underneath the skin, painful yes, but not as painful as those that open up. Those are really bad because food or drink brushes against them.

This is NOT my mouth. BUT, it looks like my mouth at times.

Yes, I get them on my lips, in my gums, on my tongue, under my tongue, on the roof (these are the WORST), in my throat, next to my teeth (try flossing with that!), after every dental procedure, after eating nuts, or accidentally using toothpaste with triclosan in it.
One of the ways they diagnose Behcet's is if you get mouth ulcers more than three times a year. hahahahahahahaha.
The joke's on me! But guess what?

I am alive and kicking. Today when I went to the clinic, I counted at least 25 people in some sort of agony: Wheelchairs, canes, walkers, or walking with help. Elderly, young people, children.
So many far, far worse off. And these were only the people with visible illness and disease. Imagine how many had "invisible illnesses"? 
I. Am. Alive. My husband is alive and doing well. How is YOUR life doing? I am jumping for joy. You should be too. Find something GREAT about today!

 

Walking/Running/Crawling

Saturday is a Big Day! Both DH and I are participating in a charity event for the American Heart/Stroke Association. We are so grateful to our friends and family for donating to the cause: Money for research and education to help someone else the way we were helped a year ago. 

This week I met a woman in the gym whose husband had a stroke two years ago. Her story was achingly familiar. Her husband had sudden vision loss. Went to the doctor. So far, so good...except...they were told they couldn't find anything...two weeks later, full blown stroke. He started talking gibberish. In the hospital he was asked how old was he? 27 was the answer...(not even close, since he knew his daughter was in her 40's!)  This man was a marathon racer, a fit and active man, but his stroke was caused by heart beat problems, and now he has a pacemaker. 

So once again, we feel blessed. It's a funny thing about human nature. You can always find someone that's richer than you, prettier/handsomer than you, nicer house than you, in better health than you. 

But we sometimes forget the other side of the coin...for someone, WE are the lucky ones, the richer ones, the better looking (duh! haha), having the nicer house, and yes, in better health than someone else that's looking at us thinking "why them and not me?". We really ought to look at just how blessed we are, not just us personally, but all of us. In our wonderful country, some of the poorest of the poor would be considered "well off" in a third world country. A small home would be a mansion to someone living in a dump site. 

In one estimation, America's bottom 5 % is still richer than 68% of the world's inhabitants!
I can't of course speak to the world's pulchritude chart, it is rather a subjective thing...

But back to being "lucky". I prefer to say "blessed". We are blessed that DH has recovered well from his stroke. We are blessed to have a strong support system of family and our extended family of close friends. We are blessed that we are able to walk together side by side. I think of many people who have lost a loved one to stroke, heart disease, and other illness and accidents. To say we are blessed is really an understatement. Humbled. In awe. Grateful. And I never, ever want to take one moment for granted.  

And this can't be emphasized enough! But add to this, vision changes!

Legions of Lesions

The weather in our part of the world has been absolutely stunning. So much so that people are walking around saying "What?" and "Huh? Is this California?" (It rains here a good share of the year)
 However, with it brings wildfires (months early), pollen counts off the charts, drownings because people forget it is not July and therefore the air might be 85 degrees, but the waterways are in the 60's if you are lucky, so dive in, and not come back up, as they are overcome with hypothermia.

It also brings health issues that are totally unexpected. For instance I have had a non-stop bloody nose today. Low humidity? Possibly. I do know that this has been a very bad day for energy levels. I am thoroughly exhausted and I can't quite figure out why. (Other than the fact that I hosted prom dinner for 11 last night) But still...then there are the lesions. My mouth is filled with them. So which came first, the lesions or the exhaustion? I am pretty sure there is a correlation.

The ones I hate the most are the roof of my mouth. It is hard to eat around the pain. They also seem to last the longest. Lidocaine helps, but only very temporarily.

My lips are also cracked and bleeding and feel very bruised. It has to be a lack of moisture in the air. I have to investigate this further so I can sue someone. Haha.

I would love to see one of those "If you or a loved one suffer from________________" lawyer commercials. If you have an auto-immune disorder, can you sue yourself?

"Hello, is this Dewey, Cheatum, and Howe? I think I have a case against me. Yes, that's right. I want to sue for damages. Especially the punitive kind. I think I owe it to myself to try and collect for mental stress. This body is making me NUTS. It is relentless! Also, can I get some sort of restraining order? This has GOT to stop I tell you! It is out of control! I am sick of being stalked by my immune system. Uh, would you take this on a contingency basis? Let's get the ball rolling!"

I have signed up to walk in our local Heart/Stroke Walk. I will walk alongside my dear hubby in the one mile survivor walk, then I will continue on the rest of the 5k walk/run to honor his survival. I am so excited for this. It's been a long time since I did a fundraiser walk for myself (fundraising for a cause). For the last few years, I have helped support and raise funds for close friends in their causes, partially because I didn't think I had the stamina to run very far, but I have been working for weeks to get better, and I think I am ready...I do walk 5 miles a day now, and will add some more running in the next couple of weeks before the walk.

I am closing in on 7000 hits on this blog. One thing that totally has me bummed is I am getting some really nice comments. Unfortunately they are advertising stupid spammy websites. I want to reiterate:I will not be a party to your golf site, your quilt site, your grocery store advert, or your chiropractor site. If you are trying to sell something, fugeddaboutit. If you have a worthy site that talks about something important (health, illness, etc) that is NOT trying to sell something, I will look at it. Otherwise, naaaahhhh. Anyway, have a great week stay healthy out there. Someone has to.

Dos and Don'ts of Steroid Use

Apparently the biggest "don't" is: Do not write a blog while on steroids. I can't believe how many typos I made in the original printing! What the heck?  Sorry. Think they are all repaired as of April 29th  LOL

Keep in mind, I am talking about legal, prescribed steroids that can, indeed be helpful. They are for the most part, a short term fix, although I know they can also be long term use for people who may have chronic illnesses. Doses can range from very small to mega-doses that can interfere with life in general due to their side effects.
For now, I am struggling with a fairly low dose steroid to combat the effects of my massive reaction to a steroid shot that was injected in my shoulder for a torn rotator cuff. However, the powers that be are now thinking it wasn't the steroid itself, but the binder in the shot. Now how the HECK am I supposed to know what to avoid? All they can say is: Don't EVER get a steroid shot again (pills seem okay). Alrighty then.

Steroids have a peculiar reaction all on their own. You have heard of course about 'roid rage. This seems to occur amongst abusers of anabolic steroids, such as those crazy body builders:
or as the Medical dictionary says:

An acute psychotic response—uncontrolled outbursts of anger, frustration or combativeness—of unknown pathogenesis seen in those who abuse anabolic steroids, typically in body builders;

I am not talking about those types, but the little sweet innocuous pills that are given for everything from inflammation to neuro diseases i.e. Bell's Palsy, to other auto-immune disorders to hives to cancer to well a whole slew of things. However, they have some drawbacks. They can make you a little teary to out and out angry and emotional;

So here is my Dos and Don'ts of Steroid use:

Do expect some emotional situations. You may cry at a Hallmark commercial.
Do NOT decide to sell your house and live off the grid. This feeling will pass.

Do expect to get hungry. Steroids can skew your blood sugar and make you think you are starving.
Do NOT round up cattle and eat them raw. Avoid the zoo, even elephants will look tasty.
Do tell yourself "I'm not really hungry, it is a mean low down dirty trick."

Avoid going to the Cheesecake Factory and ordering 3 cheesecakes to go "just in case".

Do not interact with maniacs, such as sales clerks or people that smoke. You may want to slap them for not waiting on you immediately and you might be tempted to take the cigarette out of the smoker's hand and shove it up their nostrils.

Do be nice to yourself, and forgive yourself for your short temper.

Do not engage police officers in shouting matches whilst on steroids. You may find yourself on the wrong side of the jail door, and it only swings in, I am told.

Again, I repeat: You are not really hungry. Drop the chocolate chip bag and move away. Slowly.

Don't attempt to purchase anything that can be used as a weapon, such as a baseball bat, a machete, or anything related to a kitchen utensil. Trust me, when you are in a steroid state, you will figure out how to use them for something other than their original intended use.

Do not, and I repeat, DO NOT watch anything sad on TV, you will spend the night crying. Things such as a Disney After School Special. Sesame Street. The Evening News. The Morning Shows. Kathy Lee and Hoda. What Not to Wear. This will only add to your emotional response.

Get and Give hugs and kisses, but only to people you know (and the mailman and gas station attendant do not count. They will not like this, even if you explain you are a little emotional.)

Remember, you are tapering down and you will get better. Sort of. I am personally still having the reaction but it is gearing down. The hot spots are less occurring and less prominent.

This is NOT me, but its how I feel. lol

Now, I must close. DH is taking me to The Cheesecake Factory because I was screaming it's name. Loudly.

Another day in Paradise err...Purgatory

No, I am not selling anything. I am giving you a unique opportunity to walk in my super cute patent leather flats. They are a size 7. If those don't fit you, put on some flip flops and come along.

 Yesterday I left the house not even imagining I would end up in the ER by 4pm. It was a crazy day. It started Tuesday, with an injection for my shoulder for pain caused be a torn rotator cuff. After that we went out to a movie, and dinner to celebrate our anniversary. Oddly my face was red and swollen but I wrote it off to a special celebratory cocktail. Yesterday (Wednesday) I got up and noticed a red spot about about a half dollar size on both arms. It didn't really look like a rash, but it was hot to the touch. As the day progressed it got bigger, hotter, covering half of upper arm, encircling it, cheeks flushed, and very red on my neck and chest. About 1 o'clock, I called the clinic and they fit me in. Doc immediately thought it was a reaction to the steroids in the shot Tuesday (a three way combo) so they gave me benadryl injections and more steroid and wanted me to wait 15 minutes to see how I was doing. I felt ok, if sleepy, and asked to leave. The nurse (who wasn't the original one so she hadn't seen me when I came in) was walking me out when my eye caught the back view of my arm in a mirror. Oops! It was 50% bigger above where I got the injection. She ran and got the doctor and boom, 5 people were in there, doing vitals, ekg, etc. They decided to call an ambulance and I ended up in ER,where the doctor there thinks I had an auto immune reaction not to the steroids, but to the solution added to the steroids! In other words they don't know. So on predisone, a beta blocker,an epi-pen to have handy, and an inhaler, and more benadryl. Home again home again jiggety jig. A very Long Day...

Now this is where it gets fun. If you have ever had steroids, they have a peculiar effect of skewing your appetite. You can get extremely hungry. I started gnawing on the upholstery in the car on the way home. DH was looking at me a little funny. I said "Let's stop and get a burger and fries!" Knowing I had not had a burger or potatoes (let alone fries) in months and months. We drove into our fav Burger place (where they do have some healthy choices, which I chose to ignore, but I felt I had to make the effort. If we had gone to, say, Dairy Queen, it would have been an admission of who the heck cares what we eat? There isn't anything healthy on THAT menu)

But, I digress. We ordered turkey burgers. Oh good, somewhat in control. Then Rosemary Fries. I turned to hubby and said "You do know of course those fries will not see our table, right?" He concurred. Then as we got our order I said "I wanna cone!" (I felt like I was about 4 years old) Since I cannot eat cow dairy, but yogurt seems to be less intense of a reaction, I had a small fro-yo non fat cone. I had to mention it was non fat so you could see how virtuous I was being.

Got home and discovered that our large fry container had only three fries. We were going to demand justice and yell at them for shorting us, but then we realized, we had partaken (partook?) on the way home. Oh boy.

It got worse. This is what I ate after my so-called meal.

Chocolatemandarinorangesorangejuiceblueberriescoldcereal(which I never eat due to carbs but what the heck!)applemorechocololatemorecereal and well, you get the picture! Good thing I weighed in at WW BEFORE the incident. The problem is, I am starting prednisone by mouth today and it's gonna be a long week. So...you are my conscience. In order not to eat willy-nilly, no matter how hungry I think I am, I will tell you what I eat every day until the prednisone dose is done (about a week to ten days) Yes, dear readers, I will be accountable to you. I would be accountable to dear hubby, but he would just eat crap with me to be supportive. hahaha.

So this morning, I had my usual oatmeal with apples, walnuts, cinnamon, flax seed, hemp seed (no not the stuff that makes you high and want more food silly) and almond milk. A respectable breakfast I might add, but, the day is young and we have to go get the prednisone this morning, then all bets are off. We shall see.

Oh yeah. This morning, my arms looked better, red has gone down, just swollen and bruised looking, partly from the injections, partly from meds I imagine. My face looks less red, and even though my chest is red, it's not hot and wicked. Well, I am hot and wicked, but that's just bragging.

One of the things that has worked for me while on steroids is to drink lemonade. The sour taste seems to dull my hunger cravings, so I will make a big old pitcher of Crystal Light.

Cannot go to the gym (may make the steroid side effects more intense, plus I might turn into a body builder with a high pitched voice...just kidding)  Plus, doc says no driving because of the Benadryl. Which is good, you have heard of "Roid Rage", well I wouldn't want to get angry and run some guy off the road because he switched lanes without signaling. So, here's the plan...I will put on my walking DVD and do that today for some exercise.

Chow for Now! (Of course I meant Ciao, but the food metaphors keep coming!)

The two shall become as one

Starting out my blog today with a SHOUT OUT to my beloved hubby. It is our 19th wedding anniversary today and I can honestly say, he is my raison d'etre. Look it up. Love you baby.  He is also the reason I started this blog...when he had a stroke a year ago, I needed a format to let people know what was going on, as it is incredibly hard to take phone call after phone call. And repeat it ad nauseam. So this blog was born. It has since become a forum for health and good eating habits to heal yourself.

Today I stumbled on an article that made me so excited I nearly spewed out my broccoli. I will not reprint the article (for some reason that is against the law :-) but I will print the link below. Briefly, it is about "heat-shocking" fruits and veggies to prolong their life. It is the most exciting thing I have heard coming down the pike in a long time. No chemicals. No irradiation. No accepting less nutrition to eat canned or year old frozen asparagus. But, like the singing star who has been in the business 22 years being deemed an "overnight success", I was crazy dizzy when I read that this has been in the making (as in being studied) for 15 years! What the heck? And you didn't share?????
It is NOT like blanching, and really it's not heat in the classic sense, as in boiling...it is instead a gentle warm water bath for a specified time,

Right now I have lettuce, leeks, asparagus, tomatoes, apples, mandarins, celery, beets, and who knows what else in my fridge. So after the quick dash to the computer to share this incredible news, I will be treating my own produce.

I will share the results with you in the next few days, as I will leave some untreated to see what happens. My control will be asparagus, because it takes a beating in the fridge. I am so excited, I cannot wait. here's the link:
Heat-shocking for fruits and veggies

Now go and take care of those yummies!

Also, just a word to nefarious readers: If you would like to link my blog to yours or vice versa, please put that into the comments. I will check it out first before adding a link. This is NOT a forum for advertising. If there is a product I like, I will talk about it on a case by case basis. I will NOT link to your advertisement of your services or business unless there is a really good reason to do so. I was rather put out to get some links sent to me and they turned out to be bogus or just plain advertising. This will not be tolerated (she said with her finger wagging like a librarian telling you to "shush!")
Speaking of products, I did find one that has been extremely helpful. (If you see a product here, it's because I like it. I am NOT making any swag off my endorsement!)

Anyway, the product is called Calmoseptine. It is OTC, but it might be hard to find at your local RX. It can be specially ordered OR you can go online at Walgreens or Amazon or any one of another sites.
It is for diaper rash, or other adult-type problems "back there". (I am trying to be as delicate as possible) Here is a link if you want to read more. It mostly has zinc and menthol so it is healing and cooling at the same time. Link: Calmoseptine

Invisible Diseases

 Today I decided to talk about invisible disease. You know the ones I mean. Have you ever seen a person park in a handicap spot and they look perfectly healthy? Kind of makes you want to say something, doesn't it? I admit, I have sat in judgement on people who I didn't deem "sick enough" i.e. they LOOKED fine! But what do I know?
 The funny thing is, I have an invisible disease. I should know better. I have fibromyalgia and Behcet's Disease, which also causes a rheumatoid-type of arthritis. I don't even like writing the word fibromyalgia, because it's something people make fun of as a "non-disease" and for many years has been treated that way by the medical community. In fact, it's not really a "disease" in the classic sense, but it is really described as this from the Mayo Clinic:
 "Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals." 
In the research of this, they are finding that people who have the symptoms may feel pain differently, or their nerves "mis-fire" in some way that causes overall pain. It seems to affect women nine times more than men. It seems to affect people who may have had trauma in their lives.
It is agony.
But, I try to ignore it, because it seems so stupid. Let me clarify that. It seems stupid because even though it hurts so badly, I don't want to think about it. I hate to whine.
But I look fine. I exercise nearly every day. I go to the gym. do I want to? No. Does it feel great? Yeah, when I stop. My physical therapist told me to pay attention and stop when it hurts. I told her it hurts before I get on the treadmill or the elliptical. If I stopped when it hurt, I would never do it at all. 
What does "it" feel like? It hurts in nearly every single part of my body every single moment. I have no idea what it is like to be pain free. I don't know what that means. This is a foreign concept.

Years ago when I was sent to a rheumatologist, she said I hurt because I was "fat and didn't exercise."
Another rheumy doc rolled her eyes at me and just kept loudly sighing and said "What now?" when I had a horrifying flare up last April. (I tried to make an appt at the time of the flare and couldn't see her until JUNE)

It wasn't until September that I was diagnosed with Behcet's. Have you ever had a canker sore? Before I started on meds for Behcet's, I had canker sores on steroids. One of the hallmarks of Behcet's is this: 3 episodes of canker sores in a 12 month time frame. Well, since I was a young child, I have had canker sores more like 6-10 times in a one month time frame. You can get these ulcerations anywhere on your body. Commonly in your mouth, they can also show up in your genitals. Now, with my meds, I still get lesions, but they are not as often nor of as long of duration (a few days long instead of a couple of weeks). Today, I went to a dentist for a root canal. Every needle stick, every scraped area, every "nick" of an instrument will result in a lesion. I am guaranteed of that. It is another peculiarity of the disease called pathergy. I also have lesions in my intestines, which have been mistaken for ulcers which can create a whole other agony of its own.

I have pain in my knees, making it difficult to walk up steps or even to get up from a seated position. I have had a painful shoulder going on its 8th month, so I cannot take a shirt off over my head, nor blow dry my own hair very well. I cannot even scratch my own back. I am exhausted to the point of tears some days.I cannot make a full rotation with my neck, try as I might. It makes driving fun when you are switching lanes.

BUT!  I am so lucky. My arthritis is better than it used to be. At one time, my hands were so gnarled, I couldn't make a fist or even open my hands out flat. I couldn't dig change out of my purse because my fingers could not make the grasping motion. So yes, I am lucky! I have an incredible support system. I have an awesome family and wonderful husband. I am blessed every day. I have seen many with much worse disease and my heart breaks for them. I stumbled on "The Spoon Theory" on a site called http://www.butyoudontlooksick.com/
It really sums up some things I feel every day but don't wish to burden anyone else with. You have your own crap! Forget mine! But it might explain a little tiny bit what it's like to have a disease, invisible or otherwise: (link below)

The Spoon Theory

It is very well written and may help you understand what some people go through day after day. Sadly, in reading the comments posted, a lot of them are mean-spirited and nasty. The old "walk a mile in my shoes" means nothing to some people. Guess you just have to let it go and move on.
Next time you see a person that doesn't "look" sick, be cautious. You might not see it, but it's there all the same.

Smile at everyone you meet, for you never know what pain they are going through.